Home sweet home
We spend a lot of time at home. Steve and Sheila made the decision to move within a few months of his diagnosis. Our house in Minnesota was not very accessible, so we had to make a change. We decided to move closer to Steve’s parents in Kentucky. The house we purchased in Frankfort has everything we need on the first floor and those floors are wood which is perfect for the power chair. We added some smarts and made some changes after we moved into the house.
We are using smart house technology to give Steve more independence throughout the house. We use a combination of hardware and apps to make this work.
On a separate note, I have generally been opposed to smart house technology because I work in data and security and understand the risk. However, I realized that the benefit outweighs the risk. These apps definitely improved my quality of life. – Steve
We chose Amazon Alexa because of its ecosystem. While Steve could talk, voice commands were very helpful. He now uses his communication tools to interact with Alexa.
We have several Amazon Echo smart speakers in the house. We use several variations of Echoes including one with video. With the devices throughout the house, we are able to use Alexa wherever we are which is really convenient. Steve got a Darth Vader holder for the Echo Dot in his office.
We got a smart thermostat to check and update the temperature in our house. It also integrates with Alexa which is nice.
We bought our first smart light before Steve had ALS. We thought they would be fun to have. Before Alexa, we used the Kasa app on our phones to run the lights in our house. And they are fun!
Kasa is Alexa enabled which lets us add voice control to our lights and plugs. Steve can use the app and voice control. We have been very pleased with these lights.
We bought our first smart plug before Steve had ALS. We got smart plugs to get better control of our Christmas lights, inside and outside. They worked great for this, and we continue to use them for that and accent around the house.
While Steve still had his voice and was walking, he needed a better way to flip a light switch. With Alexa and Kasa smart lights in place, we decided on the Kasa smart switches to Enable voice control. These switches had an unexpected benefit. They were not toggle switches. This meant that Steve could also use his elbows or shoulder to turn lights on and off.
We did not install these switches on our own. A group of guys from church did the installation for us. It took them a few days to install over twenty light switches due to messy wiring at our house. We had a mix of regular, three-way, and dimmer switches. After the installation, Sheila had to add each switch to our Wi-Fi and give them a name so we can use them on the app and with Alexa.
We purchased our first Ring doorbell while still in Minnesota. It gave us visibility to people at our front door which was downstairs.
When we got to Kentucky, we added another doorbell, so we had both primary entrances covered. We added cameras outside the house to watch the dog. It was also a good addition to security.
We have since added some cameras inside the house. These cameras allow Sheila to keep an eye on me if she is doing something inside or outside the house. The combination of cameras has improved our convenience, security, and safety.
Home modifications include nonpermanent, semipermanent, and permanent modifications. Nonpermanent modifications can be removed with little to no damage to the house. Semipermanent modifications will require repairs when removed. Permanent modifications cannot be removed.
Nonpermanent modification
We went through a few variations on our ramp at the front of the house. After using portable ramps to start, we got an eight foot metal ramp that traversed the steps, but it was too short to make it across our small porch. We still needed a portable ramp to go from the door to the porch.
Next, we picked up a ten-foot AmRamp ramp from another family who no longer needed it. This ramp came in two sections, 6 and 4 feet, and had handrails. It reached from the door to the sidewalk but was still a little steep. This was not an issue until Steve had his tracheostomy and switched to a larger ventilator. This plus the small generator added over thirty pounds to the back of his chair. He started popping wheelies on the way into the house.
We contacted a local AmRamp dealer about a better solution. He gave us a quote for a longer ramp and a platform by the door. It included installation and reusing our existing ramp parts. We paid for this with generous donations raised during the 2025 Walk for Steve in Minnesota. This new ramp is nicer and safer.
Nonpermanent modification
When Steve was struggling to wipe his own behind because of his arm weakness, we decided to try a bidet. It worked very well. We installed bidets in both of our upstairs bathrooms. Here are some of the features we liked:
When researching bidets, we decided to go with the midrange options. We did splurge on a nicer model for the master bathroom. The key difference is warm water. We spent more on this option and a higher rated bidet. We recommend that you research the options and prices to find the best choice for you. Be sure to keep an eye out for sales.
Semipermanent modification
We bought an elevator from a family in Alabama. Our goal was to find a good way to get Steve down to the driveway from our deck. Our garage is a tuck under, and our deck is above the driveway, basically a second story height. Sheila found this elevator and some friends from church picked it up and prepped our deck and driveway for installation. We had it professionally installed and inspected with the help of Kentucky Vocational Rehabilitation.
We used the elevator extensively for about a year. It was nice while Steve was able to drive on his own. The elevator let him drive into it and out again without needing to back out. However, when Steve could no longer drive his chair, it was nearly impossible to get him out using the companion controls on the back of his chair. We had another joystick installed on the chair so a caregiver could help him exit the elevator.
The elevator continues to serve as an alternative exit. We have switched to a ramp out the front as our primary exit.
Semipermanent modification
Swing clear offset hinges were recommended by our wheelchair technician to widen our doorway clearance. This was a great way to give Steve a couple more inches of room to get through his bedroom and office doors. It helped reduce the damage to the doorways. Steve still hit the doorways, he needs to drive better.
This furniture was specifically purchased to help Steve.
We purchased a split king from Ghost Bed. It has separate controls to raise the feet and head, vibrating massage, and USB power. The mattress is very comfortable. We kept the bed together to start with. As I got worse and needed more care, we separated the bed so my caregivers could easily access me from either side of the bed.
Many people get hospital beds which may be covered by insurance. We purchased the bed before Steve needed something special. We were due for a new mattress, so we looked with his future needs in mind. The only feature that a hospital bed has that we miss with Ghost Bed is the ability to raise and lower the entire bed. That feature would make caring for Steve easier on his caregivers’ backs. We are very happy with our decision and recommend it.
We bought a lift recliner when Steve really had difficulty standing up. This chair gave Steve more independence Around the house. The one we own has an attached remote control with large buttons. This made it easier for him to use it while he still had some movement in his hands and arms.
He was able to sleep in this chair as well. He stayed in the chair for a few days while he recovered from his feeding tube surgery. (Read the story here.)